Saturday, October 31, 2009
He went trick or treating with his two nephews Zach (Dinosaur) and Chase (Monkey).
He only went around he block because we all know its not going to be Daniel eating the candy!!
Thursday, October 29, 2009
First let me start by saying, Thank you to Gabe for bring out the ECO with new updates (the eye point) for Daniel to trial. This is a slightly smaller screen then when he tried it out with the Tobii, but he still rocked it.
Here's the video:
Wednesday, October 28, 2009
Monday, October 26, 2009
He is so sick and he is miserable. Yesterday it was the runny nose, typical cold stuff again.
Today its the listlessness and the vomiting, the warm body. It sucks.
He has such a good day (for the most part) on Friday, Saturday was nice because he hung out with Daddy.
Sunday hit and all hell broke loose. Today we are on our way to the doctor because he was yet to pee today. Not a good sign. Can't keep anything in him, can't get him to drink. This is the only time you'll hear me wish that he did have a g-tube! That way the meds and fluids would just go in.
He still looks cute, even with the mismatched pillow case cause he threw up on the other one, and the orange towel beside him for his next venture in spewing. Poor little guy. The wild look on his face, was the "Holy crap when is this going to end?"
Thursday, October 22, 2009
Things that you are scared to do but you do them because you have to, or to show your child how to get past the fear. Generally, these fears are things like - surgery, horrible diagnoses', fear of losing them, that kind of thing.
I have this one fear, that the thought of it just gives me the worst stomach ache. Putting it down in words, it is silly. Stupid actually. Unexplainable. There are so many, much more worse things we've had to put Daniel through and I can't understand why this task ALWAYS gets me worked up.
He's a good dentist, works well with special needs kids, but I HATE him. No, lets correct that, I don't hate him. I hate what he does. I've taken Daniel once by myself to the dentist and he had to have some work done. The dentist said that it wouldn't take long and that he wasn't going to give him anything because it was just the surface. He was quick I suppose, although a child screaming for 10 minutes seems like a lifetime. Especially when you can't do anything to help him. That was the last time I took him alone. I now make Lonnie take off work and go with me. Even then I still get sick, but we both go into the consult room with Daniel. Then when it comes time for the work, Lonnie takes Daniel to the room and stays with him. I sit in the waiting room doing everything I can NOT to get myself worked up and start throwing up.
I'm not afraid of the dentist, never have been. I guess my fear comes from feeling complete helplessness, and the guilt. Aw it just sucks plain and simple. I was hoping writing about it would make me feel better but it hasn't! LOL
Daniel chipped another tooth tonight, on what? I don't know!
Lonnie was brushing his teeth and said "Hey, when is Daniel's dentist appointment?"
Immediately (I am not kidding) the heart palpitations started and a feeling of dread came over me. Why? Because I now have to call the dentist in the morning, have them schedule Daniel in to fix the tooth ASAP (its sharp and I assume somewhat sensitive). They will most likely tell me to bring him in tomorrow and Lonnie is at work and can't get off!
Which means I will have to take him myself.
The dentist will repair it and he'll do it as quickly as he can, but it will only be me there. UUUGH - Why does a silly simple dentist appointment get me into an anxiety attack!
He's had tests upon tests done. He's had surgery, crap he's got some serious diagnosis' going on....and I'm flipping out about the frickin' dentist!! Sheesh!
He knows the building from the outside and he'll start with his clinging the minute I take him out of the car. He'll wrap his little arms around me and hold tight. JUST BLOWS!
Good thing is - he does like the balloon after wards.
I wonder if they will give ME the drugs to relax? :) Can't hurt to ask right!
Tell me I'm not the only one with something simple that they freak out about! C'mon just lie to me, make me feel better!!
Wednesday, October 21, 2009
I am sure the list could go on and on, but you get the point.
It really came as quite a surprise. I was flabbergasted when I sat back and realize what a hypocrite I am. I can go rant and rave all I want when it comes to other people carrying on this way, yet when I finally sat down and through about it..........I AM DOING THE SAME THING, but secretly.
Yep.....Me. Wasting my life away. Ruining days upon days. I guess maybe I can blame most of it on my age. Just realizing that this is what it is...comes with the getting older. Mid life thing. Who knows?
I love this "relationship" if we will call it that. It gives me comfort,great stress-reliever, makes me feel rejuvenated, its my escape from the reality.
I hate this "relationship" because it takes away from the time I should be doing the stuff around the house, being with my family. Being a productive part of society. It makes me feel guilty. I hide it, don't want people to know that in the middle of the day I YEARN for it, and dinner time, I am counting the hours until I can again fall into its comfort.
There is something even better about craving this ...........during this time of year. Its chilly out, sometimes rainy, all I want is the warmth that I get from it. The "aaaahhhhh" feeling that creeps throughout my body when I fall into the warmth. The feeling of ooooh man this is good $hit, and the feeling of guilt all wrapped into one......which one will win?!?
Its a love/hate relationship!
I love SLEEPING. I can't get enough of it. I think about sleeping ALL THE TIME.
Its my escape, where I don't have to think. I love the bed, I love the sound of the fan on high
I love the darkness, the smell of my pillow, the warmth of my blankets.
I hate SLEEPING, because the minute I wake up there is the guilt that I just wasted that time, where I should have been doing what I am suppose to be doing. I also hate it because there are nights when I can't sleep, when I don't have the naps, and I yearn to sleep and he doesn't come. I get so angry. All I want is Sleep but I can't because too many things are going through my head.
I hate when I am sleeping and the phone rings..."Oh did I wake you?"
me: Oh gosh no....its the middle of the day... sheesh..
Why do I hide it?
Because people will think I am lazy. Am I?
Because people will think I am depressed. Am I?
Because people will think I am a slob. Am I?
Now mind you, I can only take the naps if Daniel is napping. He is getting to that age where he doesn't like to nap. Actually he should probably be passed that stage but I have kept him in it.
I wonder sometimes what I will do when he has outgrown taking naps.
I suppose part of the craving for sleep is to escape reality for a while, it could also be age, or the fact that I am out of shape and desperately need to do something about it, but guess whose winning that fight? Sleep or Exercise??! YEP you got it, that is why my butt looks so big!
Again- its a love/hate relationship!
Tuesday, October 20, 2009
and without prompting or asking, I hear
"I a u" translated from Daniel speech to ours....plain as day " I Love you"
tears to the eyes instantly and a bigger hug...
I love you too Daniel.
Made my day.
Monday, October 19, 2009
Sometimes its really hard to ask for help when you have your pride.
It sucks actually.
Anyways, there is this contest for a woman who is divorces, survivor of cancer and is taking care of her special needs son. She needs help by winning this contest. If you could follow the link and perhaps vote for her it would be greatly appreciated.
If you can vote for the St. Clair Shores home!!
She is tied for first place currently, so maybe the little boost will help her.
Remember: whats goes around comes around!! People just helping people.
Friday, October 16, 2009
Last week I asked that everyone say a little prayer for Trevor because he was having some major surgery.
Well this past weekend Daniel, Lonnie & I went to visit and offer our support. I will say it was probably a little selfish on my part because I wanted to meet Danielle a lot too. So we went for two reasons, one to show our support and offer our services if needed. And two because Danielle is a pretty cool person (so is her hubby). I have been following Trevor’s blog for quite a while and the way she writes and how she describes things always keeps me coming back for more. She has tons of information on Infantile Spasms and she is down to earth.
Well I am happy to report that Trevor did well during the seizures and they have only seen a few since the surgery but that is expected. I cannot imagine having to be in their shoes, making decisions that they had to make. Although if I were I would have opted just as they have. Incredible people.
Trevor is doing as well as can be expected, you should hop over there and check our his blog as she keeps it updated regularly. I am hoping we won’t see any posts about seizures, and we will see many many posts of how well Trevor is doing!!
It was great getting to meet the family, it was too bad it was under the circumstances it was. Maybe next year we can plan a get-together of a bunch of IS families here in Michigan!
Thursday, October 15, 2009
We’ve been keeping busy over on our home front with lots of things with Daniel and making our fun little crowns.
Here are some examples in case you wanted to see. If not, hit that little “X” button in the top right corner! :)
And of course we’ve been making quite a few of these bad boys for all the little boys!...Thomas the Tank Train, which we first made for Daniel on his 4th birthday.
And for the little girls the reversible crowns with the flower seem to be the hit of the party!
I think my next creation is going to be for Victoria and her “Fancy Nancy” costume. Still trying to figure out what I’m going to do for that one!
or one of the characters from the Disney Movie “Cars” (Mater or McQueen).
Wednesday, October 14, 2009
Sometimes I forget that I don't need to look towards other parents, but I just need to go to my husband to make me feel better.
I sent him an email at work about being "blah" because of something I had read about another child on a yahoo group. How that child has the same thing as Daniel but seems to be doing so much more and I questioned "WHY does everything have to be so much more difficult for Daniel?" its not fair. (Well life isn't fair for anyone is it).
Anyways- this is the reply I got.
Now how awesome is that reply?! Sometimes you just have to look to the person you live with. Sometimes I forget I'm not in this alone..
Here is Daniel enjoying his swing while I cook some warm food! He loves this swing. He’ll sit in it and reads his books to me. Its the cutest thing, I’ll put him in there with his boppy on his lap and the book. He’ll look at the page and jibber jabber and look up at me to make sure I’m looking at the page, then he’ll turn to the next page and we’ll do it all over again! Its a hoot!
Of course with the cooler weather comes football season. And with football season comes the girls Powder puff game at the high school. Tori played for the Juniors this past weekend and they won against the Seniors 21-14.
Why they would pick Tori (petite little girl) to play center is beyond me! But we were out there showing our support...
With all of her face paint, Daniel didn’t realize it was her at first until she started talking to him. And then he was still a bit leery. She’s #65 or the fool with the black,white and blue strips on her face!
Tuesday, October 13, 2009
Well it is definitely fall in Michigan.
Its cold in the mornings, jackets are needed, and the weather is the type where you just want to stay in the warmth of your bed when the alarm goes off!
Of course who wouldn't want to stay snuggled up to this?
We joke about it all the time and call him “Velcro” because he gets into these moods where he is stuck to you and if you move he will wake up until you snuggle back up!
Thursday, October 8, 2009
Another form of accessing the device is with eye-gaze. This is an option that became available on the ECO after we got ours. So, within the last year it came out with PRC. So Daniel's less than one year old device can already be upgraded, click here to see.
I have been waiting a few days to post because I've been trying to think of the right words to explain it. It's at these kind of times that I wish I was good with words and could explain it well enough to get my feelings across. I am sure I will not give the moment justice, but here goes it.
The other day we were waiting in the lobby for our turn with Ms. Pat for speech therapy. She came out and said there was a man there from Tobii Technology and could she try something with Daniel and the Tobii system. Of course, me being me, I was all for it. Being the parent of a special needs child, you will pretty much try ANYTHING if it could help your child.
So, here is what the Tobii Technology offers. The child sits in front of a computer that tracks his eye-gaze. He child then makes his selection without having to move his head but only his eyes. We've tried something like this when Daniel was about 2 years old but he couldn't get his eyes calibrated to the computer back then, and he was too young.
Within mere minutes, Daniel's eyes were calibrated to the computer and he was off and running. Took no explaining to him what was going on, that he needed to look at a selection and hold his gaze for the set amount of seconds to make the selection. He just did it.
With the way Daniel accesses his device now, there is always the "oops he hit the wrong button" because the fine motor skills in his arms just isn't strong enough. We are always saying the he has a "processing delay" because once you ask him something it takes him a few minutes to "process" it and answer. Well that is because of his PHYSICAL issues, not because of his MENTAL abilities.
I stood behind him and watched in amazement. There was NO delay in Daniel making the selections that were asked of him. He was FAST, he sped through the programs. There was even a time when a game was selected for him to play and he did it, then selected the area to go back to the main menu and he selected the original game HE wanted to play, not the game we selected for him.
Again, I am probably not describing it well, but I will tell you it was a moment that took my breath away. It gave me goosebumps. It made me tear up because all along I have said, just give him time and he'll show you that he understands. I have said all along, he is a smart little boy, he just has a body that won't work for him. And right there - in the 10 minutes that Mr. Dan (The Tobii Guy) took to fit in a little boy who was not on his schedule - I was watching my child effortlessly speak through a device and let his voice be heard. EFFORTLESSLY and quickly.
This scene from Forrest Gump stuck in my head and it is how I imagine Daniel felt while using the device for the first time...
I blubbered all the way home, with Daniel sitting in the backseat sleeping. This device opens a whole new world that I knew he was capable of. I am not surprised at what he did because I KNEW he was capable of it all along. But, oh how I wish that every person that has ever doubted this amazing little boy could have been standing over his shoulder with me. I cried because it VALIDATED what I already know. I just wanted to scream, "SEE!?!?!"
So, now begins this parents journey of trying to get the money, funding, approvals to get this for our son. Of course I didn't have my camera during this therapy session, and my phone was dead so no camera there either. But Mr. Dan took a quick little video with his phone. The video is just a small example of how well he did. Check out how quick he is following the pictures.
So, I'd like to say thank you to Ms. Pat for thinking of 'trying' something with Daniel because she always willing to experiment and find ways for Daniel to prove himself. Thank you for being one of the people who believes in him. Thank you to Mr. Dan for taking the time out of his day to open up Daniel's world and coming to the rescue with a camera~!!
To all those "nay-sayers" who said Daniel can't handle things.
To the people who think the most he can handle is YES/NO questions.
To the doctors who said he wouldn't amount to much.
To the person who said he wouldn't be able to handle a device to communicate.
To the people who look upon us with pity.
To the people who judge a book by the cover and do not take the time to look inside...
You are all going to be invited to a really frickin' BIG party and wanna know who the guest speaker is going to be?
Tuesday, October 6, 2009
Say a big prayer for this little guy and his family. They are here in Detroit visiting with Daniel's neurologist. Well not really visiting but hopefully getting a new lease on Trevor's life. He is having surgery on his brain today in hopes to control the seizures that he has daily. Hundreds of them. That is some scary $hit, I know. Say a prayer for them for a quick and speedy recovery so they can have their Trevor back.
You can check out his progress over at Dear Trevor
Monday, October 5, 2009
:) I haven't been around lately. Things have been very whacked in my household. But I think things shall be settling down soon and I can get my arms wrapped back around the whole sit-che-a-tion.
Yep I got this here award and I'd like to thank everyone! :)
So wanna know who gave it to me? Well I'll tell ya....Ken over at Blogzilly.
He is one of the few dads out there that I know of that blogs about Daddy things and dealing with issues with one of his children. Now before you run over there to check it out, I gotta tell you this. His son is one of the cutest little guys you'll see. His pictures will melt your heart. Ken is very straight forward and doesn't mince words. I love that about his blog!
So now for the rules of the award, I must follow....(and so must you if you get he award!)
- Put the Lemonade logo on your blog or within your post.
- Nominate at least 10 blogs with great attitude or gratitude.
- Link the nominees within your post.
- Let the nominees know they have received this award by commenting on their blog.
- Share the love and link to the person from whom you received this award.
So without any further ado, my nominations are:
2. Addison Christine
3. Jonathan, our 25 week miracle
4. How about Memphis
5. Terrible Palsy
6. Caleigh's Corner
7. Lieck Triplets
8. Wherever He leads We'll go
9. Inside Amy's World
10. New Kind of Normal
Ok go ahead........take a few minutes and read about these incredible parents and their children!
Sunday, October 4, 2009
Today Daniel and Caitlin made homemade play dough. I used to make play dough all the time with the girls when they were younger. We’d modify the recipe all the time and use powdered kool-aid mix to make it smell better and brighter colors. Well Caitlin being all grown up now and making it for the kids in her classroom came up with this concoctions.
Of course she had Daniel helping mix everything up with his own cooking stuff (IKEA has the best kid-size pots and pans!)
So incase any of you other wonderful parents out there want to get into the fall season and Halloween/thanksgiving time. I have supplied the recipe!
Very simple – homemade ingredients so if someone by chance decides to chomp on a piece of the play dough, they shouldn’t get sick!
1 c cold water
1 Tbs vegetable oil
1/2 c salt
1 Tbs cream of tartar
2 drops red food coloring
3 drops yellow food coloring
2 Tbs pumpkin pie spice
1 c flour
Combine water, oil, salt, cream of tartar, and food coloring in saucepan, heat until warm and salt has blended. Remove from heat and add flour, until slightly thick and then put on a floured counter (so it won’t stick).
Note: The recipe calls for 1 c of flour but we always end up adding somewhere around 2 cups. This can be stored in a zip lock bag for 6 months. Or you can put it in a little container like we got from the $1 section at target.
Friday, October 2, 2009
We're still alive (barely - sick). Just so much going on and no energy or time to update. We will this weekend. We have some nice video of Daniel riding his bike, and other fun stuff.!!!
Ta Ta for now. If you're a Michigander - Hope you're enjoying the Michigan changing of colors!